How long to get your CPAP?

[tonybrentwood]

Hi,
I've just had to buy a machine as the wait from Mid Essex Trust was three to four months, unless I was willing to pay and then it is two days. I'm annoyed at having to pay over £360 for it. The hospital say they will provide a mask and service the machine once a year, but only if I sign the machine over to them so they get it to add to their stock when I don't need it anymore (presumably if I die?) so although I've paid for it I couldn't sell it on if I don't get on with it and at least get some money back towards a different machine.
I'm so annoyed I've written to my local paper, and they are coming around on Monday to do a story about it, I would appreciate knowing how long it took from being diagnosed by the NHS Specialist with sleep apnea to actually getting the machine for free so I can show the reporter the waiting times.
Thanks,
Regards,
Tony.

[James @ Intus]

Hi Tony,

Sounds like a bad deal you got there, ultimately not owning what you acquired.

Waiting times for equipment post diagnosis varies greatly from area to area. I speak daily with people from all over the UK and Ireland with stories where waiting times range from same day (exception) to never (no funds, sorry, get your own). Three months is about the average I'd guesstimate. Basically, if you're not in the right area of London, Oxford or Leicester, you're going to struggle.

People who do their sleep study with us get their study turned around in 4 working days from returning the equipment and from there it tends to be another 2 working days to get the full CPAP kit delivered. By day 10, everything is usually fully in control again, at which time most people choose to inform the DVLA.

[tonybrentwood]

Hi James,
My machine came in two days, but I have to wait a week before the NHS give me the mask. My follow up appointment with the consultant is in four months time, do I have to wait until I see him before applying for my license back or can I tell the DVLA once I'm using the machine. How do I prove to them that I won't have daytime tiredness anymore? The machine (S8 Escape 11) came with a memory card, can the DVLA read these or am I looking at at least four months before I can apply?
Thanks for all the information you and others have posted by the way, it has really helped me to come to terms with my condition.
Regards,
Tony.

[James @ Intus]

Four months is a long time to wait. Maybe you can send your data card to ResMed (or a willing fellow forum member with the ResMed card reader and software, I know there's a few here) after 10-14 days and get a progress report printed. That, if you are indeed doing OK, should be enough for the DVLA. The DVLA themselves won't be able to read the card. If it was any machine other than ResMed, I'd have run a report for you.

[tonybrentwood]

Thanks James, at least I now know that getting my license back can be quicker, I bought the S8 because that was what the consultant put on the prescription form. I'll keep in mind what you say about other forum members being able to read the card, or maybe I'll give Resmed a ring after a couple of weeks to see if they will give me a print out.
Thanks again,
Tony.

[gvader]

Hi Tony,

In answer to your question, from diagnosis to getting my machine (basic S8 Escape) to try was just over a month. This was then followed by an appointment with a nurse 3 weeks later and then it was "keep the machine and come back in a year".

While the service was quickish, at no time was an APAP used for titration and the pressure was just guessed at using the size of my neck and some maths.

I wound up renting an S8 Autoset II from ResMed for a month so that I could get an idea of what pressure I needed - hospital guessed at 12cm and the S8 ran at just under 17!

I currently adjust the pressure as I feel - if I'm waking uptired or my wife tells me that I'm starting to snore then I'll up the pressure, if I wake up thinking that a horse has been kicking my chest all night then I'll reduce the pressure.

I'm waiting for James to do a BOGOF deal on Sandman Autos before I fork out for my own shiny APAP

Edit: Forgot to say - Sleep Clinic is in Oxford

[Guest]

CPAP machines in Scotland.

Hi,
I've just had to buy a machine as the wait from Mid Essex Trust was three to four months, unless I was willing to pay and then it is two days. I'm annoyed at having to pay over £360 for it. The hospital say they will provide a mask and service the machine once a year, but only if I sign the machine over to them so they get it to add to their stock when I don't need it anymore (presumably if I die?) so although I've paid for it I couldn't sell it on if I don't get on with it and at least get some money back towards a different machine.
I'm so annoyed I've written to my local paper, and they are coming around on Monday to do a story about it, I would appreciate knowing how long it took from being diagnosed by the NHS Specialist with sleep apnea to actually getting the machine for free so I can show the reporter the waiting times.
Thanks,
Regards,
Tony.

Hi Tony

Sorry to hear you and many others are having to wait to receive their machines or purchase their own. I received mine the next morning (escape S8) from an Edinburgh hospital after spending a night there. I managed to sleep before they gave me the mask which was in the middle of the night. Then they said that if I didn't manage to sleep I'd have to come back so to save myself a return visit I managed to pass out for another couple of hours. I've struggled to wear the mask during the night and have been feeling more tired the next day but last night was the first night that I have managed to wear it straight through without waking up and taking it off during the night. However I don't feel any more refreshed than I did before but I'm going to persist, I don't really have a choice if I want to drive. The first night I wore the mask I had to get back out of bed within 5 mins as I didn't feel well (think I was hyperventilating but there wasn't a brown paper bag in sight!!) I must say that the DVLA form is a little misleading. It asks the question "Are you now free of excessive drowsiness?" Maybe this does apply to some people and although I feel tired, excessive drowsiness is not a word I'd use. I felt like they were trying to put words into my mouth. Anyway I'm now rambling off topic.......

My husband has a new knickname for me: Darthvader.... Darth for short...

[tincatinca]

Norfolk/papworth

Hi
I am absolutely gobsmacked regarding the lengthy delays some of you are experiencing.

I was admitted to Papworth RSSC within ten days of mentioning problem to my GP. Sleep study was carried out overnight Sunday, fitted with CPAP monday which was adjusted during monday night. sent home on the tuesday with CPAP etc, and list of numbers to call if any problems.

Service from the team has been superb, no problem with spares and a willingness to try different masks, machines etc.

Apparently they budget for two complete masks per year which is very realistic. I use a mirage quattro full face mask with resmed cpap. I was given a smaller unit but found it kept me awake with noise from motor, I mentioned this to team and was immediately offered a same day appointment to sort it out.

I dont know if the severity of your OSA has a bearing on matters, I am diagnosed with "severe OSA", during my sleep study i stopped breathing 530 times over 7 and a half hours!!

regards


kim

[leswaller]

regretfully it is all down to your local PCT and how important they think OSA is, and thus how will they fund it. The NHS postcode lottery again I'm afraid

[Raymondo111]

Hi Tony,

Must be an Essex problem I come under Basildon and Thurrock PCT and their service is terrible, sleep study completed in November, follow up in January and told that I need a machine. Next appointment scheduled March and then re-scheduled to 16th April, expected to get a machine but only thing the Consultant's sidekick said was 'you have OSA and I am recommending CPAP' and was given yet another form to get an appointment at Baildon Hospital but still waiting to hear. In the meantime I have bought my own from Intus and has solved a lot of the problems.

Ray....

[Cooldaddy66]

Sorry to hear you that you had to purchase your own machine.

After I was confirmed with severe sleep apnoea, I only had to wait six weeks to pick up my machine on the NHS.
My only problem really was the distance I had to travel to pick it up, as I don't drive.
I live in Clacton On Sea and had to pick it up from the Royal Brompton Hospital in London.
I couldn't have been seen by a nicer and more helpful bunch of Doctors and hospital staff though.

[incitatus]

Almost at once

My experience was: diagnosis 9.30am machine handed over 9.45 am. This was at the Ipswich Hospital (Mid Suffolk ) and was the only example of good care to be found at that establishment.

[tonybrentwood]

Really interesting to read all the replies, it obviously depends on where you live as to how quickly you get a machine.
To update on the letters I sent to my MP and the local papers, a photographer came this morning and took loads of photo's of me with the machine for a story they are doing about the lack of CPAP provision by my Trust. Providing the story appears I'll try to scan the picture and put it on the forum so you can all have a goood laugh (The photographer made me lay on the bed holding the machine!)
I also had a call from another local paper today who also want to cover it, so maybe I'm getting somewhere?
I'm off to the Hospital tomorrow to get my mask and to sign my machine over to them (Blinking cheek eh?) but I'm away and can't really start using the machine until Saturday. I'll be posting how I got on.
James was kind enough to send me some items to help me when I start, and I'll let the forum know if they help.
Keep the info coming folks, and I'm delighted to be able to talk to you folks.
Regards,
Tony.

[Astreb]

Data download from Resmed Escape 2

Hi,
I've just had to buy a machine as the wait from Mid Essex Trust was three to four months, unless I was willing to pay and then it is two days. I'm annoyed at having to pay over £360 for it. The hospital say they will provide a mask and service the machine once a year, but only if I sign the machine over to them so they get it to add to their stock when I don't need it anymore (presumably if I die?) so although I've paid for it I couldn't sell it on if I don't get on with it and at least get some money back towards a different machine.
I'm so annoyed I've written to my local paper, and they are coming around on Monday to do a story about it, I would appreciate knowing how long it took from being diagnosed by the NHS Specialist with sleep apnea to actually getting the machine for free so I can show the reporter the waiting times.
Thanks,
Regards,
Tony.

Hi Tony
I managed to get a card reader to get the data if you are interested and have access to a Windows computer.
I got a reader and a dummy card (cut to hold Resmed card which is a rare shape). Details are:
ACR38 USB x 1 £ 16.95 each £ 16.95
Budget SIM adapter x 1 £ 3.00 each £ 3.00
Sub total £ 19.95
Shipping method Standard
Postage £ 3.95
VAT £ 3.58
TOTAL £ 27.48
The supplier I used was:

http://www.smartcardfocus.com

hope this helps your situation. It's very interesting to see your sleep patters displayed as graphs and reports
Email me if I can be of assistance
Regards
Tony

[threewheelweave]

I agree with Kim on Papworth - BRILLIANT!

Hi
I am absolutely gobsmacked regarding the lengthy delays some of you are experiencing.

I was admitted to Papworth RSSC within ten days of mentioning problem to my GP. Sleep study was carried out overnight Sunday, fitted with CPAP monday which was adjusted during monday night. sent home on the tuesday with CPAP etc, and list of numbers to call if any problems.

Service from the team has been superb, no problem with spares and a willingness to try different masks, machines etc.

Apparently they budget for two complete masks per year which is very realistic. I use a mirage quattro full face mask with resmed cpap. I was given a smaller unit but found it kept me awake with noise from motor, I mentioned this to team and was immediately offered a same day appointment to sort it out.

I dont know if the severity of your OSA has a bearing on matters, I am diagnosed with "severe OSA", during my sleep study i stopped breathing 530 times over 7 and a half hours!!

regards


kim

Hi All

I agree with Kim, Papworth take it seriously and have been extremely helpful and fast. What disappoints me is the number of "confirmed" appointments that people then miss. It is such a waste of a valuable resource - Papworth have six sleep trial beds and the three days I was there two were empty each night 33.33% wasted just because people do not have the manners to telephone and cancel in advance! If you want to be seen fast offer to take any cancellation at Papworth their team is simply superb!

TWW
UK